Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

Yesterday, at a briefing session in Leinster House hosted by Deputy Billy Kelleher, a powerful presentation was made on behalf of people with cystic fibrosis and the question of access to Orkambi. Jillian McNulty, a 40 year old woman, explained how she spent up to 15 hours in bed before going on Orkambi and illustrated how she is now 19 hours on the campaign trail to get Orkambi made available. Rachel Byrne's eight year old daughter Beth has cystic fibrosis and has been hospitalised for quite some time but excels in everything she does in academia and education. She is anxious her daughter gets a chance in life and a chance to contribute effectively to society. Phil Hughes Dunphy's 23 year old daughter Sarah died as a result of cystic fibrosis. Her son Shane also has cystic fibrosis and he has climbed Kilimanjaro. Philip Watt of Cystic Fibrosis Ireland made a very reasonable and moderate presentation.

I have raised this issue on a number of occasions with the Taoiseach. Much is left to be desired in how the situation has been handled on both sides. The Orkambi drug is effective. Last week, the Minister for Education and Skills, Deputy Bruton, acknowledged this. There have been too many attempts to belittle the effectiveness and impact of the drug by the HSE and others-----

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